the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV

In response, the Scottish Government asked Health Protection Scotland to establish a that a Short-Life Working Group to bring forward recommendations about what practical steps could be taken to implement the recommendation from the Inquiry.

Delivering a targeted awareness campaign focused solely on individuals who received a blood transfusion pre-September 1991. This awareness campaign should aim to reach all targeted individuals through the use of (e.g. leaflets and posters) and more modern (e.g. social media) approaches. Such approaches recognize that an appreciable minority of people do not access information from more traditional sources. The details surrounding the design and implementation of the campaign would be worked on following any such Scottish Government approval. The SLWG agreed that any such campaign should be evaluated to determine its impact.

The identification and written offer of an HCV test to a group (up to 71) of plasma product factor recipients who are as yet not known to have been HCV tested.

A Chief Medical Officer letter should be sent to all clinicians in Scotland to remind them of certain risk factors (including pre-September 1991 blood transfusion and injecting drug use) and clinical (including otherwise unexplained Alanine Aminotransferase (ALT) liver enzyme level) indicators for HCV infection and making them aware of the recent advances in therapy and thus the benefits of HCV testing.

…I have today accepted all these recommendations to ensure that everything possible is done to find people who may have been infected and offer them the best care and treatment. …I would urge anyone who thinks they had a blood transfusion before September 1991 to seek advice from the Hepatitis helpline or their GP practice about a test if they have not yet done so.

Haemophilia Scotland CEO, Dan Farthing-Sykes, who served on the group said,

Perhaps the most surprising recommendation to the bleeding disorders community in Scotland will be Recommendation 2. The names referred to were uncovered by the look-back exercise conducted by the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) on behalf of the Haemophilia Alliance. They are individuals who are thought to have received treatment in a Scottish Haemophilia Centre during the relevant period who have been lost to follow-up. These efforts to find them are vital both in terms of their likely infection and the proper care of their bleeding disorder.

I know contaminated blood campaigners will be also be interested that the statistical work conducted as part of this process. That work concluded that ‘the number of [living] undiagnosed HCV-infected people, having acquired their HCV in Scotland as a result of blood transfusion pre-1991, is within the range of 0 and 63’. In fact, it is thought to be as low as 32, once those who have been diagnosed in other ways are taken into account. This in stark contrast to the figures of tens of thousands across the UK which have been suggested in the past. Those higher figures have often been given as a reason that the levels of financial support couldn’t be at set at more appropriate levels.

The road to improved financial support payments has already been long and winding.

Last week, those who represented the patient point of view during the financial support review group met with Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport. Several of us had been raising serious concerns about the fact that the new payments, announced in March, have not started yet. Many Haemophilia Scotland members are in urgent need of this additional support. Every day of delay causes additional stress and anxiety.

At the meeting we were told that different groups can expect payments at different times. If you are currently receiving a payment then the increase is estimated to come in October 2016. However, this timetable is subject to the issues set out below. For example, the boards of the UK-wide bodies have not yet agreed to this timetable.

Those who will get a new support payment will have to wait until the new Scottish scheme is set up in April 2017.

Payments expected in October 2016 (backdated to April 2016 where applicable)

Stage 1 payment to increase from £20,000 to £50,000 (an additional £30,000 for those already in the scheme).

Stage 2 payments to increase from £14,749 to £27,000.

HIV payment to increase from to £27,000

Co-infected payment to increase from £14,749 £29,498 to £37,000

Payments to be start with the new scheme in April 2017 (not backdated)

Widow(er)s’ pensions

The new Scottish discretionary grants. This will replace the Caxton Foundation and the discretionary element of the MacFarlane Trust (MFT). It will honour existing commitments from these successor organisations.

After April 2017 payments will be made from Scotland. The scheme is likely to be administered by National Services Scotland (NSS) which is effectively an all Scotland NHS Health Board. There will be an advisory group including stakeholders but other governance arrangements aren’t clear yet.

Issues to be overcome before October 2016

Before the UK schemes can be used to make the new Scottish payments there are some hurdles to be overcome. These are what are causing the current delays.

Westminster must pass Tax Orders so that none of the payments are liable for tax. This has to happen whichever mechanism is used to make the new payments.

To use the existing scheme to make the new payments all four nations of the UK must agree. At the moment only Scotland is signed up. We have asked all three of the other Government not to stand in the way of Scottish payments and have had these replies from England and Wales. There have also been two stories in The Sunday Herald to put pressure on England in particular.

For the payments to be made in October there must also be agreement from the Boards of the UK-wide schemes.

Issues to be overcome before April 2017

Before the Scottish scheme is established there are some important decision to be taken including,

Changes to the threshold for receiving ongoing support. The threshold is to depend on whole health impact of infection rather than focusing on liver damage alone.

A reexamination of the ability of those with incomplete medical records to apply.

An appeals procedure for those who think they should be in the Scottish scheme.

A procedure for converting ongoing payments into a lump sum settlement.

How the new discretionary scheme will operate in practice.

Groups will be established shortly to look at these points.

This article was amended on 19 August 2016 following a request from the Scottish Government make it clearer that at the time of publication none of the boards of the UK-wide bodies had given formal agreement to implement the new Scottish payments.

As soon as Shona Robison MSP was reappointed as Cabinet Secretary for Health, Wellbeing, and Sport, we wrote to her asking about progress on implementing the new contaminated blood support payments for Scotland and other recommendations. We have just received a reply which gives details about the current situation.

The Scottish Government is negotiating with the UK Government to use the current, UK-wide, schemes (such as the Skipton Fund and MFT) to make the new payments without having to wait for the new Scottish scheme to be set up. Until the negotiations are finished they can’t say when they payments will start.

They are also working to ensure the payments are treated fairly for tax and benefit purposes.

Their is an issue about being able to backdate some of the new payments without them being liable for income tax.

A decision on how the new Scottish scheme will be delivered will be taken over the summer and it will be up and running in 2017.

The clinical review group, which will look at the eligibility criteria for the schemes ,including access to ongoing payments and the widow’s pension, will be set up once the interim arrangement are up an running. As well as clinicians it will include lay people and academics.

Work on being able to convert an entitlement to a lump sum will start as soon as possible.

The Penrose Short Life Working Group is working on how to trace and offering testing to people who may not know they were infected. The Scottish Government are expecting to receive their report soon.

We are hoping to meet the Scottish Government as soon as possible to discuss these issues. We have also written to the Department of Health (England) and several Scottish MPs calling for the negotiations to be concluded quickly so that people can start receiving the new payments as soon as possible. We are hoping to travel to London to reinforce this point.

The position of Cabinet Secretary for Health, Welling, and Sport is vital for people with bleeding disorders in Scotland. We’ve been fortunate that in recent years we’ve had a succession of people in that position who have taken a particular interest in bleeding disorders and the contaminated blood disaster including Nicola Sturgeon MSP, Alex Neil MSP, and most recently Shona Robison MSP.

Just before the Scottish Parliament election the Scottish Government announced that they would be implementing the recommendations of the Financial Support Review Group and increasing payments to those affected by the contaminated blood disaster. We don’t yet know if Shona Robison will continue as Cabinet Secretary. However, whoever is in that job we are expecting an early announcement about how and when the new payments will be made and if they will be backdated to the beginning of the financial year. We are also keen to begin the review of eligibility criteria and to establish a mechanism for exchanging on-going payments for a lump sum as a matter of urgency.

A new Scottish Government has to be formed within 28 days of the 5 May election (2 June). The First Minister will take office after being nominated by the Scottish Parliament and appointed by the Queen. Scottish Ministers, including for Health, Wellbeing, and Sport can then be named.

The recommendations were co-developed as part of a Scottish review process. Details of that process and the recommendations made by the group can are available here.

Responding to the news our Chair, Bill Wright, has said,

This announcement is a watershed moment for everyone involved in this long running campaign. There are three key elements of the announcement which are particularly welcome.

Firstly, the increase in ongoing support for those who are most unwell means that we can have some confidence that they will no longer be living in poverty as a result of their infections.

Secondly, introducing pensions for widows and widowers is an important recognition that they suffered losses in their own right and that they should have a secure future.

Thirdly, the upfront payment of an additional £30,000 to all those who will not receive ongoing support goes some way towards recognising that everyone who has lived with these infections has suffered physically, mentally, or financially. We will be continuing to work very hard on their behalf to ensure that they benefit as much as possible from the new scheme and the review of the debilitating physical and mental health conditions they have developed.

No scheme can truly make up for the loss of life, and health, caused by this disaster. The Cabinet Secretary has acknowledged that there is more that to be done once these schemes move to Scotland. However, today, we have made historic progress.

We are delighted to have been successful in the latest round of the Scottish Government’s Small Grants Programme. We will be receiving funding for a volunteer led diagnosis project in partnership with our friends in the Haemophilia and Allied Bleeding Disorders Society in Malawi.

The aim of the project is to facilitate access to appropriate treatment for bleeding disorders in Malawi following a laboratory diagnosis. If the project is successful, more people with a potential bleeding disorder in Malawi will be aware of where they can go for a diagnosis and treatment, and more will have a laboratory diagnosis of their condition and have that diagnosis recorded on a National Haemophilia Register. However most importantly, more people will have access to specialist Haemophilia care and treatment.

Securing funding for the project has been made possible by the work of some dedicated Haemophilia Scotland volunteers, including everyone who took part in our Walk RED Malawi fundraiser last year (watch this space for information about this year’s event). To make the project a success we will need to continue raising money with events like this. The text donate details for supporting this project have changed. To donate just text MALA31 to 70070.

Announcing the grant, Humza Yousaf MSP, Scottish Government Minister for Europe and International Development, said,

The Scottish Government’s Small Grants Programme helps some of the world’s most vulnerable people. It also provides support to Scottish organisations to help them continue to be good global citizens.

Chair, Network of International Development Organisation of Scotland (NIDOS), Jamie Morrison, said,

Small organisations are often uniquely well placed to respond to distinct community needs, and the recognition of their valuable contribution to poverty alleviation and economic growth is warmly welcomed.

A public consultation to help shape Scotland’s International Development Fund in the future is currently underway and will run until 20th May 2016. A number of public discussion events are also taking place across Scotland – event details can be found here.

Later in the day, the Committee will also speak to Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport, and Professor Goldberg. He is leading the Penrose Inquiry Short Life Working Group on implementing the Penrose Report’s sole recommendation.

If you’d like to watch what happens live, it will be covered by www.scottishparliament.tv, just click on Committee Room 1 at 9.30am.